Understanding

age-related maculardegeneration

RCOphth

The Understanding series is designed to help you, yourfriends and family understand a little bit more about youreye condition.

Other titles in the series include:Understanding cataractsUnderstanding eye conditions related to diabetesUnderstanding glaucomaUnderstanding nystagmusUnderstanding retinal detachmentUnderstanding retinitis pigmentosa

All these leaflets are available in audio, print and brailleformats. To order please contact our Helpline on 0303 123 9999 (all calls charged at local rate), emailhelpline@rnib.org.uk or visit rnib.org.uk/shop.

In 2010, three new titles are being added to the series:Understanding Charles Bonnet syndromeUnderstanding dry eyeUnderstanding posterior vitreous detachment

Visit rnib.org.uk/shop for more details.

RNIB’s Understanding series

2

About age-related macular degeneration . . . . . 4

Causes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5

Symptoms . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7

Types of AMD . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10

Changes in your vision . . . . . . . . . . . . . . . . . . . . . 13

Hospital eye examination . . . . . . . . . . . . . . . . . . 14

Treatment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17

Coping . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 22

Useful contacts . . . . . . . . . . . . . . . . . . . . . . . . . . . . 24

Contents

3

4

About age-related maculardegenerationAge-related macular degeneration (AMD) is an eyecondition that affects a tiny part of the retina at the backof your eye, which is called the macula. AMD causesproblems with your central vision, but does not lead tototal loss of sight and is not painful.

AMD affects the vision you use when you’re lookingdirectly at something, for example when you’re reading,looking at photos or watching television. AMD may makethis central vision distorted or blurry and, over a periodof time, it may cause a blank patch in the centre of yourvision.

At the moment, the exact cause for AMD is not known.Some things are thought to increase your chances ofdeveloping AMD:

your age: AMD develops as people grow older and ismost often seen in people over the age of 65,although it can develop in people who are in theirforties and fifties

your gender: more women have AMD than men,probably because women tend to live longer than men

your genes: some genes have been identified whichseem to be linked to the development of AMD in somepeople. This has been discovered by looking at familieswith more than one member who has AMD, but not allAMD is thought to be inherited

smoking: smoking greatly increases your risk ofdeveloping AMD. Studies also show that stoppingsmoking can reduce your risk of developing AMD

sunlight: some studies suggest that exposure to highlevels of sunlight (particularly the UV light contained insunlight) throughout your life may increase your risk ofdeveloping AMD. Wearing sunglasses to protect youreyes from the UV light in sunlight is a good idea foreveryone throughout their life

Causes

5

6

what you eat: a number of studies have looked at dietas a risk factor for someone developing AMD. At themoment there isn’t agreement on how much of a riskfactor diet is. There is some evidence that vitamins A, Cand E and zinc may help to slow the progression ofAMD in people who already have the condition.

Although you cannot change your age or genes, currentthinking is that protecting your eyes from the sun, eatinga balanced diet with plenty of fresh fruit and vegetablesand stopping smoking may all help to keep your eyes ashealthy as possible.

Unfortunately, because the exact cause of AMD is notknown you may develop this condition even if you don’thave any of these risk factors.

Symptoms vary from person to person, but usually thefirst problems people notice are with their ability to seedetail. You may have problems reading small print, even ifyou wear your usual reading glasses, or you may find thatthere is a slight smudge in your sight or that your visionhas a small blurred area in the centre. Straight lines maylook distorted or wavy or as if there’s a little bump in them.

You may also find you become sensitive to bright light orthat you see shapes and lights that aren’t actually there.Sometimes people may only notice these changes in one eye.

You should have your eyes tested by an optometrist(optician) if:

you notice any difficulty with reading small print withyour reading glasses

straight lines start to look wavy or distorted

your vision isn’t as clear as it used to be.

7

Symptoms

8

The optometrist will be able to measure any changes inyour vision and examine the back of your eye. If theydetect any changes to your macula or any cause forconcern they will arrange an appointment with theophthalmologist (hospital eye consultant) for furthertests.

The macula

AMD affects the macula area of the retina. The macula isa tiny area of your retina which is very important forseeing detail, colour and things directly in front of you.

When the light enters your eye it is focused onto yourretina at the back of your eye. The retina includes anumber of layers but the most important for vision is alayer made up of cells called photoreceptors.Photoreceptors are cells which are sensitive to light.

The macula, which is about the size of a pinhead, is aspecialised area of the retina that contains a few millionspecialised photoreceptor cells called cone cells. Thesecone cells function best in bright light levels and allowyou to see fine detail for activities such as reading andwriting and to recognise colours.

Away from the central macula is the peripheral retina,composed mostly of the other type of photoreceptorcalled rod cells. They enable us to see when light is dimand provide peripheral (side) vision outside of the mainline of sight. Peripheral vision is the sight you have outof the corner of your eye when looking straight ahead.

When someone develops AMD, the cone cells in themacula area become damaged and stop working as wellas they should.

9

A cross section of the eye

Cornea

Pupil

Retina

Macula

Iris

To the brain

Optic nerve

Lens

10

There are two main types of AMD – “wet” AMD and“dry” AMD. They are called “wet” and “dry” because ofwhat happens inside your eye and what theophthalmologist (hospital eye doctor) sees whenexamining the inside of your eye, not because of how theeye feels or whether you have a watery or dry eye.

Dry AMD

Dry AMD is the more common type of AMD. It usuallydevelops very slowly and causes a gradual change in yourcentral vision. Dry AMD usually takes a long time, maybea number of years to get to its final stage. At its worse,dry AMD causes a blank patch in the centre of yourvision in both of your eyes. But it doesn’t affect yourperipheral vision, so never leads to total blindness.

Wet AMD

About 10 –15 per cent of people who develop AMD have wet AMD. You develop wet AMD when the cells of the macula stop working correctly and the body starts growing new blood vessels to fix the problem.Unfortunately these blood vessels grow in the wrongplace and cause swelling and bleeding underneath the macula.

Types of AMD

This new blood vessel growth, medically known as neo-vascularisation, causes more damage to your macula andeventually leads to scarring. Both the new blood vesselsand the scarring damages your central vision and maylead to a blank patch in the centre of your sight.

Wet AMD can develop very quickly, making seriouschanges to your central vision in a short period of time.Treatment is now available for wet AMD, which stops thenew blood vessels from growing and damaging yourmacula. This treatment usually needs to be given quicklybefore the new blood vessels do too much damage toyour macula. If the blood vessels are left to grow, thescarring and the sight loss it causes is usually permanent.Wet AMD doesn’t affect your peripheral vision, so itdoesn’t lead to total blindness.

Both types of AMD

Wet and dry AMD have things in common. They usuallyaffect both your eyes, though sometimes one eye may beaffected long before the other. Both wet and dry AMDonly affect your central vision and won’t affect yourvision around the edge of your sight. So neither type ofAMD will cause you to lose all your sight.

11

12

Some people diagnosed with dry AMD find that, withtime, new blood vessels grow and they develop wetAMD. If you have dry AMD and your sight suddenlychanges you should always have this checked by yourophthalmologist (hospital eye doctor).

Some people may have wet AMD in one eye and havedry AMD in the other which doesn’t develop into wetAMD. Most people, however, have the same type ofAMD in both eyes.

Confusingly, people who have had wet AMD for a longtime, causing bad scarring on their retina, may be toldthat their wet AMD has “dried up”. This usually meansthat there are no new blood vessels growing and thatyour macula has been badly scarred. At this stage of wetAMD, the treatments available wouldn’t help.

AMD is not painful and it never leads to a complete lossof vision. Most people with AMD keep their peripheralvision (everything around the edge). This peripheralvision will mean that you should still be able to getaround on your own and make use of this visioneveryday.

If you notice a sudden change in your vision, you shouldalways have your eyes examined by an eye healthprofessional. Usually this is an optometrist in the highstreet. However, if your sight changes very quickly thenyou can attend the accident and emergency departmentat your nearest hospital, where an ophthalmologist willbe able to check your eyes.

If you have slight changes in your vision then you shouldarrange for an eye test with an optometrist (optician).They are trained to detect any eye problems and, ifnecessary, can refer you to your GP for a furtherappointment with the ophthalmologist at the hospital.

If you have dry AMD and you notice a sudden change ineither of your eyes you should let the hospital know. Thisis because dry type AMD can develop into wet AMD andif this happens sight saving treatment may be possible.

If you have AMD in one eye and you notice a suddenchange in either eye you should let the hospital know assoon as possible. This is because you can have differenttypes of AMD in each eye and treatment might now beof help to you.

13

Changes in your vision

To find out whether you have AMD and what type ofAMD you have, the ophthalmologist will have to performa number of tests.

At the hospital, your vision will be checked and yourpupils dilated to allow the ophthalmologist to look at themacula. Your pupils are dilated with drops that takeabout 30 minutes to work. They will make you sensitiveto light and cause your vision to be blurry. The dropsallow the ophthalmologist to see the inside of your eyemore easily. The effects of the drop usually wear off inabout six hours though sometimes it can happenovernight. It is not safe to drive until the affects haveworn off.

The ophthalmologist will look at the inside of your eyeusing a special microscope called a slit lamp. You placeyour chin on a rest and the ophthalmologist will sitopposite you. The ophthalmologist will ask you to look inparticular directions while shining a light into your eye.This allows them to see your retina and any changes thatAMD may have caused. Although very bright, the lightcannot damage your eye.

Hospital eye examination

14

Sometimes the ophthalmologist can tell you whetherthey think you have AMD or not from this examination.However, you may need a test called a Fluoresceinangiogram to find out for certain if you have AMD or tofind out whether you have wet or dry AMD.

Fluorescein angiogram

This test helps the ophthalmologist find out more aboutyour AMD and whether you have wet or dry AMD.Usually, the network of blood vessels underneath yourretina can’t be seen by examining your eyes with a slitlamp. The ophthalmologist can see the damage to yourretina but they can’t see the detail of the blood vesselsthis way. A Fluorescein angiogram is a way of takingpictures of these blood vessels which allows theophthalmologist to see if there are any changes whichcould be causing problems.

Before a series of pictures is taken, a yellow dye isinjected into your arm which then travels through yourbloodstream to your eye. This usually isn’t painful butcan make some people feel sick. This dye makes theblood vessels visible on the pictures taken.

15

16

Once the dye has been injected you will be asked to lookat a special machine. The machine takes pictures of theback of your eye as the dye is travelling through theblood vessels. You’ll experience a series of flashing lightsas the pictures are taken, but the test isn’t painful. It usually takes about 10 minutes.

It is a very common test and very few people have anyserious side effects. The injection may give your skin aslight yellow tinge from the dye and it soon passes intoyour urine, which may also appear a darker yellow thannormal (possibly for up to two to three days) but often itfades quicker than that. Some people are dazzled for awhile after the flashing lights but most people find thetest straightforward.

These tests help the ophthalmologist decide which typeof AMD you have and if any treatment is possible.

17

A number of treatments are available for wet AMD.These mainly work by stopping the growth of new bloodvessels. This means that treatments usually need to begiven fairly quickly once the blood vessels start to growin your eye. If the blood vessels are allowed to grow fortoo long the blood vessels may scar the retina and thisscarring cannot be treated.

At the moment there is no treatment for dry AMD. This isbecause dry AMD doesn’t involve new blood vesselsgrowing. Although research is continuing to find atreatment for dry AMD, nothing is available yet.

Treatments for wet AMD – Anti-VEGFtreatment

The most recent treatment available on the NHS for wetAMD is with an anti-vascular endothelial growth factor(anti-VEGF) drug, called Lucentis. As new blood vesselsform in your eye, your body produces a chemical whichstimulates further new blood vessel growth. Anti-VEGFdrugs interfere with these chemicals and stop the vesselsfrom growing. By stopping blood vessels growing andleaking, further damage to your sight is prevented.

Treatment

18

Lucentis has to be injected into your eye. This is calledan intravitreal injection. This injection needs to be givenin an operating theatre or a “clean room” to avoidinfection. A clean room is a sterile room which may nothave the full facilities of an operating theatre.

Before the injection, you will be given anaesthetic eyedrops to make your eye numb, an antibiotic drop to helpprevent you getting an infection and a drop to dilateyour pupil.

The injection shouldn’t be painful but your eye may be alittle sore after the anaesthetic wears off. Because theinjection goes into the gel in the centre of your eye thereis a slight chance that the pressure inside your eye mayrise a little. This shouldn’t cause you any pain or changeyour vision, but will need to be checked shortly after youhave the injection.

The sight in the treated eye may be blurry because ofthe drop to dilate your pupil, but this should wear off ina day. Some people find that they have slight swirls intheir vision for a few days following the injection. Youmay find that your eye waters a bit more after theinjection and that your eye may be slightly red orirritated but this normally gets better after a few days.

19

If your eye becomes very painful or very red and hot totouch or you notice any worsening of your vision youshould let your hospital know as soon as possible.

The main complications of this treatment are the chanceof a rise in pressure in your eye, retinal detachment andeye infections. These only happen to a very smallminority of people (less than one per cent of peoplehaving the treatment) and there are treatments availableif any of these complications happen to you.

Usually you will need more than one injection ofLucentis. Normally a course of three monthly injections isgiven to start with and then you should be monitoredevery four weeks to check that the treatment is working.Many people go on to have more injections after theseinitial three.

Usually anti-VEGF treatments have a high success rateand in most people they stop sight getting worse. About40 per cent of people also see an improvement in theirvision.

RNIB has more information available on this treatment if you check our website or call our Helpline on 0303 123 9999.

20

Photodynamic therapy

Anti-VEGF treatments are usually the first treatmentoffered to people with wet AMD. However, sometimes it may be necessary to try a different treatment calledPhotodynamic therapy (PDT). This is a type of lasertreatment which uses a combination of a light sensitivedrug and a low energy (cold) laser to stop new bloodvessels growing.

You will be given an injection, usually in your arm, of alight sensitive drug called Verteporfin. Once this drug hasmade its way to the new blood vessels which grow in wetAMD, your ophthalmologist can target a very bright light(a cold laser) onto these blood vessels. The laser causes areaction with the drug which seals off any new bloodvessels that may be growing.

This treatment also needs to be given at the early stagesof the blood vessel growth so that it can prevent thenew blood vessels causing damage.

21

Treating dry AMD

Unfortunately at the moment there is no way to treat dryAMD. Although research is going on to try and find outwhy the cells of the macula stop working, this hasn’t yetlead to a treatment.

There is some evidence that high doses of vitamin A, C,E and the minerals zinc and copper when taken togethermay help slow down the progression of dry AMD,particularly if someone already has changes to theirvision because of AMD in one eye.

There are a number of vitamin products available whichhave been designed for people with dry AMD and youcan usually buy these over the counter from yourpharmacist. However, there is no evidence that takinghigh doses of these vitamins can prevent you developingAMD in the first place. A balanced diet with plenty offresh fruit and vegetables is good for your general healthand may also help your eye health.

You can find more information about nutrition and theeye on our website or by calling our Helpline on 0303 123 9999.

22

Being diagnosed with an eye condition can be veryupsetting. You may find that you are worried about thefuture and how you will manage with a change in yourvision. All these feelings are natural.

Some people may want to talk over some of thesefeelings with someone outside their circle of friends orfamily. RNIB can help, with our telephone Helpline andour emotional support service. Your GP or social workermay also be able to help you find a counsellor if youthink this would help you.

The Macular Disease Society has local groups which meetthroughout the country and also offer a telephonecounselling service. Sometimes it can help to talk aboutyour feelings or share with people who may have hadsimilar experiences.

Help to see things better

Both types of AMD can cause severe problems with yourcentral vision. However, most people with AMD havesome vision that they can use everyday and using yourvision won’t make your AMD worse.

Coping

23

There are lots of things that you can do to make themost of the vision you have. This may mean makingthings bigger, using brighter lighting or using colour tomake things easier to see. Ask your ophthalmologist,optician or GP to refer you to your local low visionservice, which can provide you with magnifiers to helpwith reading, advice on lighting and tips on how to makethe most of your peripheral vision for everyday tasks tohelp make the most of your sight.

Local social services should also be able to offer youinformation on staying safe in your home and gettingout and about safely. They should also be able to offeryou some practical mobility training to give you moreconfidence when you are out.

Our Helpline can also give you information about the lowvision services available, and our website offers lots ofpractical information about adapting to changes in yourvision and products that make everyday tasks easier.

Royal National Institute of Blind People105 Judd Street, London WC1H 9NEt: 0303 123 9999helpline@rnib.org.ukwww.rnib.org.uk

Macular Disease SocietyPO Box 1870, Andover SP10 9ADt: 0845 241 2041www.maculardisease.org

Royal College of Ophthalmologists17 Cornwall Terrace, London NW1 4QWt: 020 7935 0702www.rcophth.ac.uk

Driver and Vehicle Licensing Agency (DVLA)Drivers Customer Services (DCS)Correspondence Team DVLASwansea SA6 7JLt: 0300 790 6801www.dvla.gov.uk

Useful contacts

24

Please help us improve the information we supply bysharing your comments on this publication.

Please complete the form and return to:FREEPOST RSCB-GJHJ-HLXGRNIB Publishing105 Judd StreetLondon WC1H 9NE(There is no need to use a stamp.)

Alternatively, you can email publishing@rnib.org.uk.

1. Where did you receive your copy of this leaflet?

2. Did you find that the information was presented in away that was easy to read and easy to understand?Please give details of anything you feel could beimproved.

We value your feedback

✁

3. Is there any information you would have foundhelpful, or were expecting to find, that was missing?

4. Further comments. Please use the space below for anyother comments you have on the information in thisleaflet or any aspect of your contact with RNIB.

10006 /09/10

We do all we can to ensure that the information wesupply is accurate, up to date and in line with the latestresearch and expertise.

The information used in RNIB’s Understanding series ofleaflets uses:l Royal College of Ophthalmologists guidelines fortreatment

l clinical research and studies obtained through literaturereviews

l information published by specific support groups forindividual conditions

l information from text booksl information from RNIB publications and research.

For a full list of references and information sources usedin the compilation of this leaflet emailpublishing@rnib.org.uk or call 020 7391 2006.

Information sources

This leaflet has been produced jointly by the RoyalCollege of Ophthalmologists and Royal NationalInstitute of Blind People.

© RNIB and RCOphth RNIB reg charity no. 226227RCOphth reg charity no. 299872

Printed August 2010. Review date September 2011.

ISBN: 978 1 85878 697 1 PR10006

If you, or someone you know, is living with sight loss, we’re here to help.

RNIB Helpline

helpline@rnib.org.uk

0303 123 9999